An Often Missed Piece of the Picture in Assisting People with Multiple Sclerosis
By: Virginia I. Simnad, MD, MS and Lorien Friedman, LSW
EvergreenHealth MS Center
Multiple sclerosis is a chronic neurological disorder with a high incidence in Washington State. While effective therapies are making a significant impact on the course of this disease, it remains a challenging diagnosis, characterized by episodes of worsening cognitive and physical disability of variable severity and recovery. In some, this disability is progressive over time. About 30% of individuals with MS may eventually need some form of support to maintain independence in their home. The majority of this care is provided by unpaid caregivers, usually the patient’s spouse or life partner. Recent studies have found that the physical, emotional, and social stress on caregivers is substantial, and corresponds with the level of both cognitive and physical impairment of the person living with MS.
Early recognition of caregiver stress and factors linked to the perception of care burden needs to be part of a multi-disciplinary approach to intervention for persons with MS. A recent study by Buchanan et al.(Int J MS Care. 2011;13:76-83) analyzed information from a national survey of 530 individuals providing unpaid care to individuals with MS. These individuals were identified from the North American Research Committee on Multiple Sclerosis (NARCOMS) registry (which represents up to 10% of MS patients in the U.S.). This study’s results showed a clear correlation of caregiver stress and the severity of disability of their partner. Further, the perceived burden experienced was significantly higher among men than among women as caregivers, and that the burden was higher for both genders of caregivers providing support to males with MS. Bladder dysfunction was identified as one of the most socially disabling problems associated with MS affecting caregiver burden, and contributing to the risk of social isolation. Fortunately, options for bladder symptoms management continue to improve, and with better control of these symptoms, a corresponding decrease in caregiver burden. Access to respite services also was found to significantly reduce the risk of caregiver “burnout”, allowing them time to participate in other important activities. Finally, recognizing and supporting the psychological stress of shifting roles of family and in particular life partners to one of caregiver cannot be over emphasized. Early screening for signs of caregiver distress should be a part of comprehensive MS Care.
There are a number of good resources to consider. A caregiver (or “care partner”) support group can provide valuable support, information and resources which can help the caregiver to reduce stress and improve coping. Caregiver support groups are offered in Seattle:
Seattle Caregiver Support Group
Date: 4th Thursday of each month
Time: 6:30-8:30 p.m.
Location: Swedish Medical Center – Cherry Hill Campus - Mother Joseph Room
Contact: John Daughters 206.937.9604
Respite care resources vary from county to county. You can contact your local Aging and Disability Services office to inquire about respite programs in your area. In Seattle-King County, you can call 206.448.3110 or 1.800.972.9990.
Other options to consider are hiring help at home and adult day programs, some of which are tailored specifically to the needs of people with MS. The social worker in your physician’s office can provide resources in your area. You can also contact the National MS Society at 1.800.344.4867.